Living with Multiple Sclerosis
Living with multiple sclerosis such as disease is not easy for anybody. Feelings of anger, blame, bitterness and even fierce hatred are common as people come to terms with and try to adapt to their loved one's illness.
The best way to deal with those feelings is to talk as openly as possible about them. And if someone important in your life is suffering with MS, learn about the disease and how it can affect sufferers - not just physically, but emotionally and mentally. Knowledge is power and will give you more of a sense of control at a time when your world might seem to be descending into chaos.
Help is out there. In many developed countries there are excellent Multiple Sclerosis support teams, charity organizations and self help groups offering a wealth of knowledge, experience and advice. You may feel you are living the nightmare alone but rest assured that there are millions of people worldwide both directly and indirectly affected by this disease.
Partners, Families and Friends Living with MS
George, the 32-year-old husband of an MS sufferer, said: "My wife Claire was only 29 when she was diagnosed. Our son was two. I fell apart and got really angry with her for having the disease and selfishly blamed her for what it would do to our son and me. It has taken a while and a lot of education to get back on track."
MS can lead to sexual dysfunction and this in turn can lead to the person without Multiple Sclerosis feeling guilty for wanting sex or being turned off by symptoms of the illness.
Laila, the long term girlfriend of an MS sufferer, admits to feeling deeply resentful: "My boyfriend is in a wheelchair. We have been together 10 years throughout his MS but now he has problems walking, going to the toilet and speaking. We've got no sex life and deep down I did want children.
"I sound like a callous bitch but it is really hard. I am embarrassed and don't want to be seen out with him. I don't love what he's become and would love to walk away but I feel trapped."
It's a common mistake to focus solely on the physical symptoms. All too often the cognitive ones, affecting the sufferer's thoughts and emotions, are overlooked. It's important that these are dealt with alongside the more obvious symptoms of the disease.
Multiple Sclerosis sufferers can be very demanding. In some cases these demands can seem unreasonable but as MS affects the cognitive functions a sufferer's entire personality may seem to change before the eyes of their bewildered loved ones. All control of feelings can go out the window - there can be difficulties with memory, concentration, self control and emotions. The mood swings can be extremely severe at times and sufferers may sink into a deep depression which is both distressing and draining for those around them.
It's also a tough time for children, especially those who may be too young to understand what's happening. Psychiatrist Dr Alexander Burfield, based in Hampshire , England , says that children can become especially distressed if they feel left out or believe there is a frightening family secret.
"Some children learn to feel guilty either because they believe they are the cause of the patient's MS or because they feel they are an extra and unwanted burden," he says.
Ali was just 10 when his dad was diagnosed. "I didn't understand. At first they didn't tell me anything but bit by bit dad told me about the disease and promised he would never keep anything from me. "
There are lots of internet chat rooms for youngsters affected by Multiple Sclerosis. These can be a great way for children to talk to others in a similar position.
At times families desperately need respite so it's essential that voluntary carers have a very good knowledge of the disease and an excellent working relationship with local healthcare professionals. They should be well trained, supported and supervised.